Now half way through 18 week chemo and loathing what it does to my body, bowel inflammation, hair loss, stomach cramping. All pervasive e haustion. Feel very out of control and not much continuity with oncologist so far due to holidays so nobody really has oversight of my case. I need to get that back on track but I also need to reach out to fellow sufferers to see if they too feel this powerlessness and confusion. Am on carboplatin and taxol.

Any advice on Sydney groups or how one van sit down with someone and have a decent conversation would be very much appreciated.

Thank you

I never suspected I would find myself on an Ovarian Cancer forum seeking support - but these are unique times we are in, after all.

Originally from Toowoomba, QLD, I have been living in the UK for the last 18 years. My 71 yo Dear Mum(DM) still lives back near Toowoomba and we tend to take turns visiting each other every couple of years. DM has grown to love travel and calls herself a "World Traveller"! On 7 Jan this year, I got the phone call I always dreaded getting living halfway round the world- it was DM to tell me she has been diagnosed with OC Stage 3. Symptoms??? The usual suspects - abdominal pain, some bleeds, ascetic bloating.

As a registered nurse in the army, I'm quite composed and professional and like to think I handle stressful situations well, but soon realised this all goes out the window when its a family member, especially your DM. I went into practical mode for her - contact the OCA and got fantastic advice and lots of resources to send to her in Toowoomba. The team on the end of the email when we got the first diagnosis

DM handled 10+ weeks of chemotherapy like a trooper, being much stronger and more positive than I ever gave her credit for (and that I probably came across as!). I suspect she's had a relatively easy chemotherapy journey than some of the stories we have read- no nausea or similar side effects. She has lost her hair but take it in her stride. I think she quite likes the lil' caps she now wears! She has smaller weekly doses rather than every 3 weeks.

This Monday (11 May 20) DM heads to Brisbane for surgery to have 'everything he can see with cancer on it' removed (her consultants words!). Unfortunately, we've just heard her post-chemo scan has picked up likely cancer on the liver, bladder, bowel and diaphragm :(. As always, she is keeping positive.... and that's a motivation for me to ensure I do as well. I can have my moment when the Skype turns off......!

COVID-19 has exacerbated a bad situation and made it worse as I would be in Australia supporting her as opposed to still being here in the UK. The solace is she is from a small country town with all the benefits that brings at times like this- a close knit supportive community who will rally around and the family back home.

Whilst DM is not completely techno-naive, the forums I suspect would confuse her. lol. So, any messages of support would be greatly welcomed. I will login and show her my screen over Skype. Whilst I, her friends and close family can be sympathetic, sometimes all you need is to hear from is someone who has been through things themselves and speaks with the authenticity I'm not able to do.

Many thank for taking the time to read this... I'm looking forward to my DM being a cancer survivor and coming on many more trips to UK to see me :)

Nurse81 (Patrick)

So, good luck Nicole!

My 90 year old mother has been diagnosed with large cystic mass 18 cm x 10 cm , ovarian cancer.

We have drained 2 litres of ascites, which shows cancer cells, there is no cancer to any other organs present. Her CA125 is at 1860 which is very high

Wondering if anyone has undergone surgery to remove a mass this size?  What age are you , complications etc.  Doctors have conflicting information . its a slow growing mass and advice is Chemo will not be affective.  recommending surgery followed by chemo .

Can anyone help please??

thank you

Can anyone recommend an empathic gyne oncologist who is proactive and holistic in their treatment approach, and up to date with relevant trials?

Many thanks

Tara16

Wondering if anyone has any experience of going from treatmeant at a public hospital (e.g. Peter Mac), then getting surgery done privately (to avoid longer wait times publically), then going back to public for ongoing treatment? Would the public doctors have a problem with this?

A bit of background: my mum was diagnosed with 3C OvC in June 2017, received carbo/taxol chemo and had debulking surgery (went from CA125 in the 3000s to single digits), then recurred with spots on the liver after only 5 months NED. Since recurring, she's had tamoxifen and then participated in a Durvalumab (immunotherapy) trial. On scans it appears that the cancer hasn't spread anywhere except for the liver, but there is a new spot on the liver so she has been kicked off the trial. Since it's been over a year with minimal spread they're willing to consider surgery to remove the liver spots, which mum is very keen to do. Everything in the public system seems to be going super slowly lately and she hasnt had any treatment since early June. They still haven't made a surgery date despite agreeing to it weeks ago, nor have they agreed to or put her on any alternative treatment in the interim.

We're super keen to get her some treatment asap, which is why we're investigating getting the surgery done privately. Just not sure if that will cause issues with her treatment at her private hospital down the line. If you've had experience with this kind of thing please let me know. Any experience of advice would be most welcome as we're getting pretty anxious to make a move. Thank you!

Thank you for reading

Yesterday she had her first appointment with an oncologist who visits Darwin Royal hospital every month. The treatment plan is for her to go to Brisbane where hopefully she will be able to have a hysterectomy in 3 weeks, there is another tumour showing in her remaining ovary and the doctor said they can’t stage the cancer until after this second operation. She is a public patient and will be going to the Mater hospital for the operation and follow up treatments.

The biggest concern for her at the moment is to find somewhere to live in Brisbane now/ asap and for the duration of treatment which could run into months.If there is anyone living in Brisbane with any ideas could you please let me know. I’m new to this forum and not sure if you can send private messages?

My daughter is happy for me to put out feelers on her behalf so at least I feel I can be of some help to her. She has no permanent address in Darwin and has been staying with friends and then in a unit for a month which she has to leave on Friday. She has done a lot of house sits through Aussie House sitters and has received some excellent reviews, she is single and into healthy eating and yoga. She is self-employed and runs her own small art and design business which has been put on semi-hold at present, so there is little income happening.

Needless to say all our lives have been turned upside down and due to being significantly disabled I am not able to hop on a plane and be with her and help which is a great sadness and frustration, my husband is my carer. We are all hopeful that the cancer may have been found early.

Thank you for reading, Rosemary

My boyfriend's sister was diagnosed with ovarian cancer stage 3c in sept 2017. She has the BRAC1 gene. Her mother was first diagnosed in 2013 with uterus cancer, it came back in 2015 then again in June 2017.  She sadly passed away in Nov 2017.

My boyfriend's sister had surgery as well as chemo. A small tumour has come  back just a year after her first treatment in her abdomen area. She had radiation but doctors have seen stopped that as they believe it has spread to the abdomen lining. She is waiting for her CT scan results.

In the meantime we( family) have done research and has anyone had HIPEC surgery?

If so, which hospital/ surgeon?

Any replies would be greatly appreciated.

Thank you in advance

Lina

My boyfriend's sister was diagnosed with ovarian cancer in 2017. We are waiting on some tests as it possibly had come back in the abdomen and we( the family ) have done some research on HIPEC.

I'm wondering if anyone is having this done at Peter Mac in Melbourne and who their surgeon is ?

Thanks in advance and wishing all good health.

Lina

Just wondering if anyone here has had HIPEC Hyperthermic intraperitoneal chemotherapy - hot chemo in the abdominal cavity) for OC that's spread?  I'll be having cytoreduction surgery and HIPEC at the Peter Mac sometime before the end of the year, and am wondering if anyone has tips for getting through it better, and for recovery?

Take care

Lucy

But then I had the same pain 4 or 5 times after that. During this time I kept thinking it was something I'd eaten. Then my sister was getting married and I got busy. The last time it happened it was in the middle of the night and freaked out because this time I couldn't blame food allergies. I went to my regular GP who felt my stomach, sent me for urgent CT scan, blood test and ultrasound. Turns out I have a 12 cm complex cyst. I had surgery on 30 August 2018 to remove it. It's going to be 3 weeks on Thursday, 20 September 2018. I'm going to have my first chemo session on 21 September 2018. I'm a bit scared and I'm wondering how bad it'll be.

I'm 35 years old, no kids or partner. My mum and sister are my rock. I'd never had an operation in my life, and boom! The first operation I have is this one. Really sucks. But my doctors say they are looking to cure me. I'd be grateful to hear other people's experience with chemo. I'll be given 6 rounds of chemo, each session will be 3 weeks apart. The drugs I'll be given are called Paclitaxel and Carboplatin.

I’m Julie and I’ve been diagnosed with Stage 2c ovarian cancer

It’s about three weeks since I made the appointment to see my GP, two weeks since I first spoke to the gynaecological oncologist and one week since my surgery. It’s weird how it’s all happening so fast, but some days seem so slow

Thankfully, the surgery went well, recovery has been mostly good and prognosis is positive. I’ll start chemo in a few weeks.

I’m 37 years old with two kids under 5. All my fears and concerns centre around them. So far, they’re coping well. We’ll just take each day as it comes and try to prepare them for the chemo journey ahead.

This website has been very useful and reading through your stories has been both informative and calming.

Thank you!

I’m starting chemo again tomorrow as it’s been 5 weeks since I had surgery. Hopefully I won’t have to many side effects this time round. My hair had started to grow back so I’m hoping it won’t fall out again, not much I can do about it if it does. But I have been using a shampoo to stop hair fall so who knows. I’ll try anything once or twice. Not looking forward to stating chemo but looking forward to seeing all the oncology nurses they do make the day much more pleasant. My ca 125 level has come down to 20 (when I was first diagnosed it was over 2000) so I’m hoping that will drop more. Doc was pleased with results because I have responded really well to everything so far. Anyway on a different note I would love to hear where everyone is from and how everyone is doing. I’ve noticed a lot of people haven’t posted anything for a long time and I’m curious as to how they are going. Maybe one day we can all meet up for a cuppa. Anyway I’ll let you all know how I go With chemo. Dionne

Here is my story...l was diagnosed with Ovarian Cancer mid November 2017, and was operated on in mid Januarythis year.  I have just started Radiation Therapy for five weeks combined with Chemotherapy for four of those weeks, then to be followed by Chemotherapy for the following five weeks.

l am still tying to process the diagnosis, everything has happened so fast...

l am unsure what l should put here as my story is a long one and l do not know if l would have enough room.

Thank you,

Sioux

I really would like to hear from ladies who were diagnosed with stage 3c (aggressive ) cancer and your journey . I have had surgery for hysterectomy but I still have cancer on the perinteneal .

my Chemo starts 29/1/18 it will be 6 weeks since surgery .

Thanks. Susan

Here are my tips for surgery:

1.  Walk, walk, walk.  As soon as you can get out of that bed and walk.  You can feel yourself healing.

2.  Do your breathing and coughing exercises after surgery.  They hurt but are worth it.

3.  Take your own pillow!!!  Hospital pillows are hideous.

4.  Find a good belly pillow.  If you need to cough of sneeze, hold this against your belly for support.  If you need to lie on your side, put it under your belly for support like when you were pregnant.

5.  Posture!  As soon as you sit up, roll your shoulders back and keep your back straight.  You automatically slouch after surgery and if you do this you will have back problems.

6.  Invest in heat packs.  You'll need them because your back and stomach muscles are going to be sore

7.  Research good scar treatment creams and gels.  When everything has healed, start treating your scars as soon as possible to soften them and minimise pulling.

8.  As soon as you're recovered take up something like yoga or Pilates to build up your core strength and develop impressive abs.

9.  And keep walking.

Thats all I can think of now.

Nikki

My name is Lyn and I was diagnosed in Feb this year I guess we mostly have the same story with symptoms. I did go to my Urogynecologist for urine urgency I had had an earlier mesh repair done and had good results, but two years later just didn't feel right.  She checked everything out and said it was all good.  I wonder now if I should ring her so maybe she could do some other tests. I have completed surgery and chemo.  I thought surgery was bad, but chemo was worse.  Just getting my hair back and I love it, I didn't feel right with a wig and scarves were hard to tie.  I did go a little bogan and wore a lovely merino and possum beanie my sister bought for me in NZ. I am in Lorn NSW if anyone wants to call in for coffee.  Cheers :yn